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Health : Medical Research (Grantmaking/Grants Payable)

International Rett Syndrome Foundation

Funding research for treatments and a cure for Rett Syndrome

three stars

85.85

4600 Devitt Drive Cincinnati, OH 45246
tel: (513) 874-3020   Web Site
EIN: 31-1682518

Board Leadership
William Babiarz
Chair

CEO
Melissa Kennedy
Executive Director

  Score
(out of 100)
Rating
Overall Score & Rating 85.85 three stars
  Financial 80.00 three stars
  Accountability & Transparency 100.00 four stars
This rating was published 12/20/2019 and includes data from FY2018, the most recent 990 received at that time.

The International Rett Syndrome Foundation (IRSF) was established in July 2007 through the strategic merger of the Rett Syndrome Research Foundation and the International Rett Syndrome Association. IRSF funds research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services. IRSF coordinates, cultivates, accelerates, and funds research that will produce a cure for Rett syndrome and reveal and develop treatments that will make the lives of people living with Rett syndrome richer and free of pain and discomfort. IRSF also assists families of individuals living with Rett syndrome and advocates for and raises awareness about individuals with Rett Syndrome.

The International Rett Syndrome Foundation (IRSF) was established in July 2007 through the strategic merger of the Rett Syndrome Research Foundation and the International Rett Syndrome Association. IRSF funds research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services. IRSF coordinates, cultivates, accelerates, and funds research that will produce a cure for Rett syndrome and reveal and develop treatments that will make the lives of people living with Rett syndrome richer and free of pain and discomfort. IRSF also assists families of individuals living with Rett syndrome and advocates for and raises awareness about individuals with Rett Syndrome.

Impact Information

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Reported Results
Showing 3 of 4
Total in 2019
Number of Rett syndrome families registered with us.
10,384
Number of grassroots fundraising events held.
88
Number of New Parent Packets mailed.
132
Number of new donors
5,037
This impact information is current as of March 2020, when it was provided to us by GuideStar. At this time, Impact information published on this organization's page has no effect on its rating per our methodology.

Financial

three stars

80.00

Accountability & Transparency

four stars

100.00

This rating was published 12/20/2019 and includes data from FY2018, the most recent 990 received at that time.
Overall Rating Chart
  Program Expenses
(Percent of the charity's total expenses spent on the programs
and services it delivers)
90.5%
  Administrative Expenses 4.5%
  Fundraising Expenses 4.8%
  Fundraising Efficiency $0.04
  Working Capital Ratio (years) 0.50
  Program Expenses Growth -8.6%
  Liabilities to Assets 62.9%
All data for Financial Performance Metrics calculations was provided by International Rett Syndrome Foundation on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by International Rett Syndrome Foundation on recent 990s filed with the IRS.

Highly Rated

Charity Name & State Overall Score Overall Rating
International Rett Syndrome Foundation (OH) 85.85 three stars
The Buoniconti Fund to Cure Paralysis (FL) 89.38 three stars
International Society for Infectious Diseases (MA) 87.00 three stars
24 Foundation (NC) 86.51 three stars
Dystonia Medical Research Foundation (IL) 93.30 four stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $1,927,924
   Federated Campaigns $0
   Membership Dues $0
   Fundraising Events $1,842,156
   Related Organizations $0
   Government Grants $404,518
Total Contributions $4,174,598
   Program Service Revenue $1,115
Total Primary Revenue $4,175,713
   Other Revenue $-527,159
TOTAL REVENUE $3,648,554
   
EXPENSES  
   Program Expenses $3,210,726
   Administrative Expenses $207,040
   Fundraising Expenses $188,508
TOTAL FUNCTIONAL EXPENSES $3,606,274
   
Payments to Affiliates $0
Excess (or Deficit) for the year $42,280
   
Net Assets $2,041,275

Program names and associated costs are listed for the top programs as reported on the charity's most recently filed Form 990. The top programs displayed will include the largest three programs, or those programs covering at least 60% of the charity's total expenses, whichever comes first.

Program Name Amount Spent % of Program Expenses
Research $2,640,961 82.3%
Family Empowerment $569,765 17.7%

Ratings History

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2018-12 12/20/2019 85.85 three stars
2018-12 12/01/2019 85.57 three stars
2018-12 11/01/2019 83.85 three stars
2017-12 12/01/2018 91.42 four stars
2016-12 02/01/2018 89.39 three stars
2015-12 03/01/2017 87.34 three stars
2015-12 02/01/2017 87.16 three stars
2014-12 06/01/2016 87.43 three stars
 
CN 2.0
2014-12 02/01/2016 91.58 four stars
2013-12 06/01/2015 87.88 three stars
2012-12 04/01/2014 92.84 four stars
2012-12 02/01/2014 91.95 four stars
2011-12 12/01/2012 93.28 four stars
2010-12 02/01/2012 93.25 four stars
2009-12 09/20/2011 93.86 four stars
 
CN 1.0
2009-12 11/24/2010 91.32 four stars
2008-12 11/01/2009 94.86 four stars
2007-12 10/01/2008 94.41 four stars
2006-12 11/01/2007 89.30 three stars
2005-12 11/01/2006 92.15 four stars

The data displayed on this tab is provided by the IRS in the form of Publication 78 and the Business Master File (BMF).

EIN 31-1682518
Name in IRS Master File INTERNATIONAL RETT SYNDROME FOUNDATION
NTEE Code H12
NTEE Classification Fund Raising and/or Fund Distribution
NTEE Type Medical Research
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities
Foundation Status Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi)
Deductibility Contributions are deductible
Affiliation Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations).
Group Name [Not Applicable]
Ruling Date March, 2000
Filing Requirement 990 (all other) or 990EZ return
Fiscal Year End December
IRS Forms 990
(provided courtesy of Foundation Center)
(Log In or Register Now to View Forms 990!)
  • December, 2017
  • December, 2016
  • December, 2015
  • December, 2014
  • December, 2013
Compensation % of Expenses Paid to Title
$142,013 3.93% Melissa Kennedy Executive Director
Other Salaries of Note
$256,198 7.10% Steven Kaminsky Chief Science Officer

Highly Rated

Charity Name & State Overall Score Overall Rating
International Rett Syndrome Foundation (OH) 85.85 three stars
Rheumatology Research Foundation (GA) 92.80 four stars
LUNGevity Foundation (IL) 90.96 four stars
Be The Match Foundation (MN) 89.42 three stars
Sarcoma Foundation of America (MD) 97.10 four stars

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This charity has an official representative registered with Charity Navigator.

Charity Contact Info

International Rett Syndrome Foundation
4600 Devitt Drive
Cincinnati, OH 45246
tel: (513) 874-3020
fax: (513) 874-2520
EIN: 31-1682518

Visit Web Site

Board Leadership

William Babiarz
Chair

CEO

Melissa Kennedy
Executive Director

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